Family Health Histories: We Know They're Valuable, So Why Don't we Collect Them?

May 08, 2015 9:00 AM

Americans overwhelmingly believe that collecting family health histories is important, but only about 37 percent actively compile such information, according to a 2014 survey co-authored by Joshua Schiffman, an associate professor of pediatrics at the University of Utah.

That’s up only slightly from the 30 percent of Americans who, in a separate 2004 survey, said they collected family health history information. Americans today know roughly the same, or less, about their health inheritance and only 2.6 percent had ever collected information using a web-based tool. “New tools and approaches may be necessary to promote clinically meaningful improvement in collection [rates],” the authors conclude.

The study, published May 1 in the American Journal of Medical Genetics Part A, was one of two recently authored by Schiffman calling for more robust, consumer-friendly data collection tools.

Recording a patient’s family medical history has long been considered good medicine, and vital to genetic diagnosis and determining a patient’s risk for inherited disease. It’s no less important today with the rise of big data, genomic medicine and the imperative to reduce health spending through better preventive care. As an added incentive: New federal “meaningful use” provisions encourage providers to have histories on at least 20 percent of their patients.

Yet the tools available for collecting family history data are “archaic by today’s standards and unlikely to meet the challenges related to changing reimbursement structure and [electronic health record] incorporation or even to be readily shared with family members,” opined Schiffman last month in JAMA. The Viewpoint article was co-authored by Willard Dere, MD, director of the U.’s Program In Personalized Health, and Utah alumnus, Brandon Welch, PhD, now assistant professor at the Medical University of South Carolina. Schiffman and Welch are researching and developing a web-based family history tool: www.ItRunsInMyFamily.com.

Barriers to the collection of complete histories are numerous and evidenced by the fact that collection rates have barely budged over the past decade, despite the availability of online tools and government-sponsored promotional efforts urging their use. Nor have attitudes about the value of such tools changed, shows Schiffman’s randomized SurveyMonkey poll of 5,258 adults.

The 2014 poll was designed to mirror a 2004 survey by the US Centers for Disease Control and Prevention (CDC), which found 96 percent of Americans consider family health histories important to their health and that 70 to 95 percent could report the type 2 diabetes status of their relatives, depending on the type of relative. But only one-third actively kept thorough family histories. Those who did were more likely to be educated women who were married, or previously married, and had a personal history of type 2 diabetes.

Similarly, the 2014 survey found 96 percent of Americans believe knowledge of family medical histories to be “very important” or “somewhat important,” and that 37 percent actively keep family health histories. Most were able to report the type 2 diabetes status of their mother (91 percent), father (86 percent) and siblings (93 percent). Women remain twice as likely to collect family histories than men, and collection rates are highest among those with more than a high school education, and a personal history of type 2 diabetes. Interestingly, residents of New England and mountain states have the highest collection rates.

“Unfortunately, most doctors don’t discuss family histories with their patients, typically because we don’t have enough time during a clinical visit,” says Schiffman, a pediatric hematologist-oncologist. “And when they do, patients are often hard-pressed to remember past one generation or two. We need to make it easier for patients to collect accurate and complete histories, and to do so in a way that provides useful feedback for patients and their doctor about what those histories mean for personal health.”

The University of Utah has a rich history of genetic and family history research, fueled by the Utah Population Database (UPDB), a repository of nearly 8 million genealogies matched with public health and medical records. It is the largest database of its kind in the world and available for use by scientists around the globe.

This family history focus has led to the identification of a very real need for a new clinical tool to remove barriers to the collection and sharing of health histories, Schiffman said. “ItRunsInMyFamily.com is a new social media website still under development as a U. spin-off, designed to help patients collect, interact, and benefit from their family history.”